Posts Tagged ‘treatment’

Yet another treatment: Robaxin

March 20, 2010

After going to my doctor a couple weeks ago, because I’d been in a bit of a flare and my back had been bothering me more than usual (I’ve been needing more Vicodin than usual, which isn’t much but is concerning. She focused more on my fibro pain than my back pain, which upset me at first, but I think might be okay now that I know her suggestions.

She decided to think about my situation and then call me and offer some suggestions, so 5 days after my appointment, she did call. She suggested Robaxin, a muscle relaxer that works by depressing the central nervous system. She recommended 750mg at night before bed, and hopes for a 25% decrease in fibromyalgia pain over the next two weeks.

I’ve taken it for 4 nights now, and there seems to be a need for finding the best time to take it (which can be annoying), because right now it looks like I need to take it about 3 hours before bed, to give it time to take effect and to allow me to function in the morning without waiting 3-4 hours for the groggy zombie feeling to wear off.

I will say I’ve been very productive so far (compared to before). It might be a combination of the outstanding weather we’re having, or a new medical marijuana product I’ve found, the Robaxin, or all of the above. I had a great two days off with my husband and friend, and yesterday even walked in the pool for awhile.

Clearly I overdid it yesterday, too much pool walking, and then a walk to the corner market for dinner items. I’m really exhausted and really uncomfortable, but I *do* think I’ve seen an improvement, and even when I’m sitting here in a lot of pain, I’m so thankful for all I did yesterday and over the last few days.

It’s an unusual feeling, having to “settle” for “a little improvement” over “getting my life back.” With fibro pain improving, I’m left with mostly back pain, and between the pain in my back (and even with improve fibro pain), my cloudy brain, and uncontrolled fatigue, I know I won’t be working any time soon, if ever again. It’s weird to me that I have improved symptoms, but they’re not improved enough to get “better.” It’s a weird feeling to have to lower one’s standards or expectations about reasonable treatment.

However, if this is going to be a long-term thing, I could probably get used to the Robaxin. That time in the pool yesterday was just heavenly.


still truckin’

October 2, 2009

I was going to post a general update, but before I get to that, I just wanted to give a little shout out to the only comment about this site via stumbleupon.

from: Plank2x4 reviewed 7 months ago
Give it time, Vicodin is still a narcotic, and now she is taking it on a regular basis… Watch the show House… she will be like him in two months! Great story! (source)

Up until about 97 seconds ago, I thought that it was good that “House” educated people about unusual medical issues. “House” has even been known to mention fibromyalgia as a legitimate disorder (even if it’s always ruled out, since fibromyalgia is pretty anti-climactic in show biz), which I appreciate, along with other little understood autoimmune disorders. However, this guy, a complete stranger, just accused me of being a junkie because of a character on a television show.

And here I am, discovering this 7-month-old comment, and I’m NOT A FUCKING JUNKIE. Unfortunately, I’m *also* not a brilliant doctor with impeccable analytical and reasoning skills, but I guess I shouldn’t be surprised. Because it’s fucking television.

So, in case you’re wondering, plank2x4 (although I doubt you are), I’m still taking Vicodin, and I’m still not addicted. I do take it daily in the morning, when my back pain is the worst, and on rare occasions (about once a week) I’ll take a second or third dose that day. One pill (that’s a dose of 5mg hydrocodone) once a day hardly makes one a junkie. This has been my routine since I started taking the Vicodin, and I can count the number of back pain flareups requiring a second day of extra dosing on one hand. (Once was the weekend we walked all over Chicago. Then when we walked all over San Francisco the week we came out to find a place to live. And then the week of my bone marrow biopsy, which kept me in bed for a good week or more.)

It’s people like plank2x4 the government is addressing when they use fearmongering to scare the pants off citizens about things like over the counter pseudoephedrine, even when you have terrible allergies, and prescription opiates, even when your pain is so severe you can’t pull your pants down to go to the bathroom, carry a bottle of laundry detergent, or bend over to empty the dishwasher. (That’s me, by the way, without my morning Vicodin dose, in case you didn’t figure it out.)

So, now that my feathers are all ruffled, and you know I’m not a junkie, I’ll tell you how the bone marrow biopsy turned out.

My iron stores are low. That’s the iron that’s supposed to be in my bone marrow, but isn’t. Apparently, my serum iron levels are borderline normal, but it’s still possible to have nearly nonexistent iron in the marrow, and when that happens, things start working overtime, and the bone marrow starts pumping out whatever it can think of to take the place of the missing iron, and that resulted in too many white blood cells and platelets. The treatment is effective and relatively simple: I need to get 6 weekly infusions (by IV) of ferrous gluconate (iron). The hematologist will recheck my blood during the course of this and at the end, and then decide if anything else needs to be done, besides eating iron-rich food and taking some iron supplements (while I am vegan, and this is actually not difficult to do in a vegan way). Hopefully she didn’t mean “recheck” with a second bone marrow biopsy, because there’s a high probability that I would flat out refuse another biopsy, especially without sedation.

I had my second infusion this week, and it’s going fairly well. After the first one, the very next day I went grocery shopping for the first time by myself in over a year. This is unheard of! I had mental clarity, and a little energy. By the end of the week, I was pretty tired, but that was the fibro talking from doing more than I was used to all week. I was still mentally alert! I still am now, actually. After the second infusion, I didn’t get much more energy, and I developed phlebitis at the IV site. They used the same site for both infusions, but this week the nurse used too large of a needle (they usually need to use the smallest), and banged me up pretty good (hurt like hell going in). It was rough. I had to go back to the treatment center just so they could check on it, and they said it should improve, but no more using that site for awhile. Since I don’t have any other less difficult spots, I’m kind of dreading my infusion on Monday. I’m not sure where they’ll stick me. :(

It’s pretty nice to have some of my brain back, though. I was really feeling… dumber. I still do stupid stuff (like forget to turn on the oven when cooking, or the coffee pot when making my husband coffee in the morning), but that’s more like “fibro fog” and less like my brain cells are wasting away, which I was starting to worry about. But apparently it was low-iron-fog instead. ;)

Anyhow, so currently my only (new) complaints are a near-constant stomach ache, probably from the massive doses of iron, and the phlebitis in my left hand. My hand is improving, and hopefully my stomach will either adjust, or return to normal when all these infusions are done.

I know a lot of “fibro bloggers” give lots of advice, but for now I’m just documenting this whole process, and my new found adequate healthcare. Honestly, what works for me might not work for you, and vice versa. Next time, I’ll talk about what’s working for me and my fibromyalgia.

I’m creeping a little too close to the 1000 word mark, so I think it’s time to wrap this up. Thank you for reading about one fat girl’s fibro journey. :)

things are improving

March 28, 2009

I haven’t posted in awhile because things aren’t too bad! An update is in order, though.

I’ve been on vicodin for my back for about a month. I’ve been able to walk around with less problems, and I can even lift some of the totes and boxes we’ve been packing. I’ve got to be careful, but it’s nice to feel a little more useful around the house. It’s amazing exactly how much pain I’ve been in. I still have weakness and numbness in my legs, which is annoying, but the decreased pain makes it easier to ignore the numbness.

With my back pain lessened, I now know the full extent of my fibro pain. Which is ridiculously annoying. The pain is kind of maddening, really… it’s like needing to stretch but being unable to stretch out the knots no matter how much I bend and contort. It’s also interesting that the narcotics aren’t touching the fibro pain. What an odd pain it is, that it can’t be touched by strong pain killers!

At night I’m taking Flexeril, and that seems to relax my shoulders (the most annoying part of fibro for me, I’ve discovered!) to make it easier to sleep. I know it doesn’t work for everyone, but if you haven’t tried it, and it’s hard to sleep because of the fibro pain and tightness, I highly recommend giving it a shot. Some nights it doesn’t help, but more often than not, it does. I can feel the stiffness melting away slightly, and that’s about the point when I fall asleep.

I wake up with tons of back pain and I can hardly stagger down the stairs to the couch, where I pop my first vicodin of the day and check my email and putter around online while it kicks in. It takes about an hour before I can move for real. I sometimes need a second vicodin 8 hours later, depending on what we’re doing. If things are *really* bad, I’ll take a third before bed, but I’ve only had to do that a couple times.

I had a followup with my doctor a couple days ago to talk about the progress. He was glad to hear it! He refilled my scripts and we talked a bit more about how I’m feeling. He wasn’t surprised to hear I’m still tired and still having fibro pain, but was glad I’m walking around more and less glued to the couch.

Even though things are improving, we’ve still decided that going back to work is not a viable option for me. I’ll talk more about disability next time.

Fibromyalgia as a legitimate disorder

March 11, 2009

Last week, my husband and I were going a bit stir-crazy being cooped up in the house so much. We’ve been busy packing, and my husband has been busy with schoolwork, but it was getting us down. We decided to pack up and take a day trip to Chicago (well, a quick overnight trip). I figured it’d be a great way of testing out my new pain control.

And I did do pretty well, I have to admit. I walked and walked and walked, with minimal complaining. However, my fibro flared up and made my shoulders ache. My skin hurt all over. I spent 3 days after we got home just lounging on the couch and dealing with nearly unbearable pain in my shoulders and neck. Okay, fibro, I get it. You win this round. But I still get credit for covering so much ground on foot in Chicago.

A news story was published today saying, “A Massachusetts anesthesiologist has been accused of fabricating results in nearly two dozen published studies that claimed to show after-surgery benefits from painkillers including Vioxx and Celebrex.” Other drugs included Lyrica and Bextra. (source) The plot thickens when we find out that this doctor was funded by Pfizer for 5 years to study the effects of their own drugs for pain control. It sure does seem shady. I would like to believe that Big Pharma has only one noble goal: to cure people. But I’m bitter and jaded (and an ex-pharmaceutical employee), and I know that every pharmaceutical company has the same goal, and it’s not about curing people. It’s about making money. Obviously they’re making money by improving quality of life for some people who can afford it, but the bottom line is the almighty dollar.

Fibromyalgia is a vague disorder (more of a syndrome), diagnosed by excluding everything else. Those of us who have fibromyalgia have a lot of similar symptoms (including symptoms that are not in the diagnostic criteria but probably should be), but I admit we’re an exhausting bunch. Our symptoms change from day to day, sometimes several times a day. We may not know exactly when our symptoms started, because they’re so vague and creep into our lives slowly over time. We may not be able to articulate what hurts and how it hurts because the pain is so complex, deep and throbbing in the muscles yet the softest touch on our skin feels like we’re being stabbed with a serrated knife. And, let’s not forget, those of us who are fat are usually told our problems are due to our weight, because that’s much easier than working towards a diagnosis and treatment plan for a bunch of annoyingly ambiguous symptoms.

This makes it very difficult for me to trust the pharmaceutical companies. I’m not sure they have our best interests in mind. Fibromyalgia has had diagnostic criteria since 1990, but it’s been fairly vague (with the exception of the Tender Point Test, which requires doctors to be very precise and consistent when conducting). Then along comes Lyrica, with a vague list of indications. Lyrica, meet fibromyalgia, “a textbook definition of an unmet medical need,” according to Pfizer (source). Unmet medical need, or unmet need for profit? Lyrica pretty much cleared the billion dollar mark in its first year (source), as well as opened the door for a whole new chapter in Pfizer’s portfolio: fibromyalgia drugs. Since then, Lilly’s Cymbalta has also been approved for the treatment of fibro, and there are more drugs coming down the pipeline.

It’s almost like fibromyalgia was tailored to fit the drug, not the other way around. The fact is, fibromyalgia is a real disorder, with real symptoms, and real people suffering from it. The symptoms may be vague, but they’re there, and they’re predictable. Not every doctor has bought into the reality of fibromyalgia as a disorder, but they also used to treat homosexuality as a disease and practiced bloodletting to treat fevers, so I have hope they’re going to come around eventually.

Unfortunately, I think fibromyalgia is just a victim in the crossfire between the need for more government-funded research and the profit-driven privately-funded research conducted by pharmaceutical companies. If the government funded more research in this area, they could strive to fund less biased researchers, such as the ones at universities. Pharmaceutical companies could spend more time manufacturing less expensive drugs with more of academia conducting research instead of Big Pharma doing the work. I want to see more research being done with chronic illness, and I don’t want to hear about doctors funded by Big Pharma grants sitting in a room together creating some diagnostic criteria to fit the indications for a new blockbuster drug. I know my solution isn’t perfect, and I’m not claiming this is the only right way to solve this problem, but I’m getting sick and tired of reading about how fibromyalgia is a “murky” disorder, and I’m even more sick of hearing that it’s all in my head. (One more link on the subject, here.)

And my disclaimer: I’m not arguing that Lyrica and Cymbalta are not effective for people. I know these drugs work and have turned lives around for many people suffering with fibromyalgia. I want these drugs to stay on the market, and I want people to continue using them responsibly, if the drugs are helping them. But what I don’t want is another conveniently vague disease plucked off the shelf to extend the patent life of a drug. We should be researching fibromyalgia for the sake of understanding it better, not for the sake of selling drugs.

wow, a happy post!

March 1, 2009

I finally went to my GP three days ago to touch base with him. He made a note at my request that I had to leave my part-time job. We talked briefly about my frustration that I’m always in pain and always tired and I felt useless. He told my husband to “kick her butt” and then said “but don’t hit the tender points.” Har har.

He agreed with me that Cymbalta and Lyrica weren’t the best fit for me, since I was concerned about negative effects of a psychotropic drug, as well as taking a medication that is likely to cause weight (Lyrica). The doctor agreed with me and said that both drugs are likely to cause weight gain, and agreed with what I said about taking an anti-depressant. We talked about how tramadol does well for my fibro pain, but doesn’t touch my back pain.

My GP was hesitant about going down the “slippery slope” of narcotic use, and I agreed with him but asked if we could try it. I was hopeful if my back (and hips and legs) would stop hurting, that I could maybe deal with the fibro pain better. He offered me Vicodin (hydrocodone + tylenol) for a month to try. He urged me to only take as much as I needed, and to avoid taking it if possible. I don’t want to get addicted to anything or build up a tolerance to anything either, but if it worked?

Boy, did it work! I took a pill that night and my back improved tremendously. I’ve always had a problem with the “Pain Scale” (link shows 1-5, though my doctors operate on 1-10) because my pain was always so mixed and complicated, and all over. I used to say I was always at an 6 to an 8, depending on the day. But once I experienced a moment with NO pain? Holy cow, I realised I’ve been living at a 9/10 or 10/10 for the last couple years. It’s been so awful that now that it’s gone, I realise exactly how bad it was. Now I’d say I’m at a 2/10, where it hurts just a little, but it’s SO much more bearable, that it’s fine.

You’d think because I was taking narcotics, I’d be sleeping all the time, and I’m really not. I admit I feel fatigued (which is different from tired), and that makes it hard to just jump back into things, but I’m in LESS PAIN. Being in less pain gives me energy! I can walk around a store with my husband! I’ve even gotten back into the kitchen to cook, which is something I haven’t done in a few months.

Also, I asked about a muscle relaxer for the fibro, and my GP offered Flexeril. I take it at night, instead of a Vicodin, and it relaxes my knotted shoulder muscles enough to make it easier to sleep. Sometimes I put the heating pad on my shoulders, too. The last 3 nights, I’ve slept through the night (except to get up to pee once), and woken up feeling better and in less pain than usual.

Who knew this was even POSSIBLE? I can’t help but wonder if this is only a very temporary effect, but even if it is, I want to remember what it was like to have a little bit of my old body back. And I want to document it!

I haven’t found a cure, but I may have found a way to manage my pain.